A Trisomy 18 Journey - A Father's Perspective

Loving Abigail - A Father's Perspective

In February, 2003, one of the members of the Trisomy 18 Support Foundation asked for a father's perspective on having a baby with trisomy 18. Several fathers responded.

Here are Steve's thoughts about Abigail's life, written six months after saying goodbye:

I am the father of Abigail Grace (8/27/02-9/1/02, full T18). This whole experience has been an accelerated course in knowledge and wisdom. Life, or death, is what you make of it. I could have shut down and become bitter toward God. Or, I could put my whole heart into the discovery of what is good.

The biggest surprise was the incredible joy even with all the sorrow of the situation.

I already had strong faith in God, so I chose to look for what is good. From the first time we heard Trisomy 18, Mindy and I chose to find out as much as we could about it. We went farther than learning what it was by asking “what if?” for Abigail. We developed a plan for each possibility along the way. Each of these babies is different, but planning helped to ease the uncertainty, which is the worst part of the anticipation. It felt good to be able to tell the Doctors what we wanted; and to speak with enough knowledge to convince them. We molded all our plans around what was best for Abigail.

When Abigail arrived, we were ready with cameras and a birth plan. But, no matter how ready we thought we were, it was all new and full of surprises. The biggest surprise was the incredible joy even with all the sorrow of the situation. Though she was so frail and near death, we cherished every moment, holding her in our arms the entire five days afraid to sleep.

Our other two children, Nathan (5) and Sarah (2), loved her without prejudice. The whole family gathered in the room for her first bath and we laughed when she pooped on Grandma. Of course, not everyone gets to have five days with these children, but the point is to look for the joy and the good that will come.

Another blessing unforeseen is the drawing together of our family. I love my wife a little more. I love my children a little more. I hug them all a little more tightly and a little more often. I love my family, friends, and neighbors, even strangers a little more. I cherish my very short time on the earth a little more. And I’m much more careful to make my salvation sure so that I can see Abigail Grace again soon. All this is by choice. Other men have found themselves growing apart from their wives and being bitter. But impatience nearly always causes people to make bad choices. Be patient, especially with your wife.

What is ahead is a battle of sorts. Fight uncertainty with knowledge. Fight sorrow with joy, Fight bitterness with love.